End of Life Care


By Tara Athanasiou

Published 8 December 2020

End of Life Care:
Dignity through Digital Health

The role of digital in transforming end-of-life care

At its heart, end-of-life care is about understanding and how to enact the wishes and preferences of individual patients at the most difficult point in their lives. Patients who are at the end-of-life are looked after by many health and care professionals in different settings, including their GP, hospital team, hospice, community nursing team, as well as social care, out-of-hours providers, third sector organisations and emergency services.

The challenge is enabling the different care providers to share information about an individual patient’s care and end-of-life preferences in a safe, dignified, up-to-date and patient-focused way.

Typically, preferences for end-of-life care are shared by patients with their GP and other care providers, such as community and hospital teams and hospices, and these are then inputted into each organisation’s own electronic systems. The problem is that these systems are often not interoperable, which raised the risk that the latest wishes of the patient may not be available to all health and care providers. The interoperability challenge is heightened in an end-of-life context, are rarely static and often change during the last weeks and months of life.

Approaching EPaCCS Projects – sharing our experience

As part of working with Humber, Coast and Value ICS, we were engaged to deliver an Electronic Palliative Care Coordination System (EPaCCS) to provide a solution to overcome these challenges.  EPaCCS enables the recording and sharing of a patient’s care preferences and key details about their care at the end-of-life including their preferred place of care and death, the circumstances under which they’d want to be admitted to hospital, whether they would want CPR to be attempted and details about their medications.

Our work on this initiative, which includes project management, business change, stakeholder engagement, on-boarding and training, has provided some valuable insights to share with other NHS systems considering how to harness digital to improve the delivery of end-of-life care. The critical success factors for the project have been:

1. Clinical engagement and leadership is key

From the outset, it was important that EPaCCS was not approached as a ‘digital’ project but was focused on harnessing a digital solution to deliver transformational change in the delivery of end-of-life care. In order to succeed, the roll-out of EPaCCS needs to be clinically-driven and key to this was the identification of clinical champions and establishing a Clinical Design Authority. The oversight, enthusiasm and networks of these individuals are instrumental in the roll-out of EPaCCS and embedding it within clinical and operational practice.

2. Develop a shared understanding of what you want to achieve

EPaCCS is about putting the wishes of the patient at the centre of care and supporting people approaching the end of life, their families, carers and the clinicians that look after them. At the outset of the project, it is important to understand what the objectives of the EPaCCS project are, what the current position is and how benefits will be measured. As well as measuring efficiency savings from a reduction in paper forms, duplication and information chasing, these benefits need to focus on the experience of patients, for example, care delivery and place of death being in line with patient preferences.

3. Work with information governance and clinical safety leads from the outset

Information governance and going through clinical safety assessments are enablers not barriers. Work with these teams from the outset to ensure the right governance in place as this underpins the success of the project and the confidence of your stakeholders.

4. Focus on system-wide change, not just technology

Business change is instrumental: we needed to understand the current ways of working across different localities and any system variation and work with stakeholders to map out AS-IS and TO-BE processes for end-of-life information sharing. The diagram below shows the approach that was taken to the mapping of information flows with EPaCCS:

The training and on-boarding process was central to successfully embedding EPaCCS. It was important that training covered clinical and operational processes, not just technology. This was achieved by working in close collaboration with chairs of the Clinical Design Authority to produce a clinical training video which has been very helpful with on-boarding, embedding and adoption of EPaCCS. Alongside this, we’ve also found it beneficial to provide training materials in different formats to meet different requirements of organisations and their staff.

About the HCV EPaCCS

The EPaCCS solution has been instrumental in supporting the coordination of care during the COVID-19 pandemic, there has been a major focus on Advanced Care Planning for vulnerable patients. EPaCCS has provided a solution to share patients’ end-of-life care preferences and plans in real-time between the different health/care providers looking after them.

By the end of July 2020, over 3,000 EPaCCS records had been created and the solution is continuing to enable and support collaborative working for end-of-life patients and their families, duplication and ensuring that the most up-to-date view of a patients’ preferences and status are visible and updatable across different health and care settings.

Tara Athanasiou is a Business Change Consultant for Ideal Health and has led on the delivery of EPaCCS across the Humber, Coast and Vale ICS.

If you would like to find out more about how we can help your organisation in this challenging time, then please get in contact:

T: 01483 453508 or  E: info@idealts.co.uk

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